Improving and measuring the function of patients with pulmonary hypertension through rehabilitation

Pulmonary hypertension is a disorder of the pulmonary circulation which arises from many causes. Regardless of aetiology, pulmonary hypertension results in breathlessness and reduced functional ability, and impacts negatively on survival. There is a growing body of evidence for the benefits of rehabilitation in pulmonary hypertension, and international guidelines recommend its inclusion in patient care pathways. Despite this, access to rehabilitation programmes for patients with pulmonary hypertension in the UK is very limited. This programme of work therefore sought to examine how existing research and knowledge of rehabilitation in patients with pulmonary hypertension could be advanced, with a particular focus on the delivery of rehabilitation in clinical practice for patients with pulmonary hypertension in the UK, and the outcomes used to assess the benefits of rehabilitation. This goal has been achieved through a Review of Service, which described an innovative rehabilitation intervention for patients with pulmonary hypertension, and a Literature Review which highlighted the importance of selecting suitable outcome measures in the design of studies of rehabilitation. In the wake of changes to clinical practice brought about by the COVID-19 pandemic, the PERSPIRE study was undertaken which demonstrated the safety and potential of the 1-minute sit-to-stand test, an outcome which could be used in rehabilitation and in remote assessment. The findings of the completed studies are novel and through their publication and wider dissemination across academic clinical and patient networks have an impact on research, policy and clinical practice. Plans have been made for further research which will continue to develop the findings of the research in this programme of work

Physiotherapy practice in pulmonary hypertension: physiotherapist and patient perspectives

Pulmonary hypertension (PH) is a life-limiting disease affecting circulation to the lungs. The primary symptom of PH is breathlessness, yet research has shown that patients with PH can exercise safely and can benefit from exercise to improve exercise capacity and maintain quality of life. This study aimed to investigate the nature of physiotherapy delivered to patients with PH in the UK. This was a two-phase sequential, exploratory, mixed-methods study. Interviews were conducted with seven lead physiotherapists at specialist pulmonary hypertension centers and three patients. Survey data came from 63 physiotherapists caring for patients with PH in specialist and non-specialist settings. The findings from the two phases were triangulated and analyzed. Findings showed that physiotherapists and patients see the benefit and potential of physical activity for patients with PH to maintain functional wellbeing. However, current physiotherapy provision focuses on acute inpatient care and planning for discharge and is not therefore aligned with research evidence and clinical guidelines. In the absence of inpatient rehabilitation facilities, physiotherapists will occasionally access existing community services, e.g. pulmonary rehabilitation; however, specialist knowledge of this rare condition can be lacking in local services. There is aspiration among physiotherapists and patients for a new approach which supports patients from diagnosis with PH to end of life. This includes promoting and delivering rehabilitation and exercise interventions to achieve better health outcomes, in line with patient needs. Treatment would be commissioned and delivered within existing national health systems with physiotherapists developing strategies for health improvement

Exploring a physiotherapy well-being review to deliver community-based rehabilitation in patients with pulmonary hypertension

Background: Highly structured, supervised exercise training has been shown to be beneficial in patients with pulmonary hypertension. Despite evidence of the effectiveness of community-based rehabilitation in other cardiopulmonary diseases there are limited data in patients with pulmonary hypertension. Methods: This prospective study evaluated the intervention of a physiotherapist well-being review in patients with pulmonary hypertension who had been established on targeted drug therapy for between 3 and 12 months. The intervention included a detailed consultation assessing functional, social and motivational status to identify individual patient rehabilitation goals and facilitate tailored referrals to community-based services. Results: One hundred and thirty eight patients (79% pulmonary arterial hypertension, 17% chronic thromboembolic disease), age 67±14 years, diagnosed over a one year period were evaluated between July 2017 and January 2018. Fifty-two percent of patients were referred to community-based pulmonary rehabilitation programmes, 19% received other forms of community rehabilitation, 17% were given exercise advice, 5% had an assessment of social support and 7% declined any intervention. At the end of the study 32% of patients were undertaking independent exercise. Conclusion: This study has identified that the majority of patients with pulmonary hypertension who are optimised on targeted drug therapy have rehabilitation needs. The use of a physiotherapy well-being review can identify this need and facilitate access to community-based rehabilitation. Further research is required to evaluate the efficacy of such interventions in pulmonary hypertension

Is it feasible to conduct a randomised controlled trial of pretransplant exercise (prehabilitation) for patients with multiple myeloma awaiting autologous haematopoietic stem cell transplantation? Protocol for the PREeMPT study

Introduction While myeloma is an incurable malignancy, developments in disease management have led to increased life expectancy in recent years. Treatment typically involves stem-cell transplantation. Increased survival rates equate to more patients living with the burden of both the disease and its treatment for increasing number of years, rendering myeloma a long-term condition. Evidence exists to demonstrate the benefits of exercise for patients recovering from stem-cell transplantation, and prehabilitation—exercise before treatment—has been shown to be effective in other disease areas. To date there has been no research into prehabilitation in patients with myeloma awaiting transplantation treatment. Our objective is to determine whether it is feasible to conduct a randomised controlled trial into pretransplant exercise for patients with multiple myeloma who are awaiting autologous stem-cell transplantation. Methods and analysis This mixed methods study identifies patients with diagnosis of multiple myeloma who have been assigned to the autologous transplantation list and invites them to participate in six weekly sessions of individualised, supervised exercise while awaiting transplantation. Quantitative data to determine feasibility targets include rates of recruitment, adherence and adverse events, and outcome measures including 6 min walking distance test and quality of life. Qualitative interviews are undertaken with a purposive sample of patients to capture their experiences of the study and the intervention. Ethics and dissemination Ethics committee approval has been obtained. Dissemination will be through open-access publications and presentations and will seek to reach multiprofessional bases as well as patients and carer groups, addressing the widespread interest in this area of research. Trial registration number NCT03135925; Pre-results

Establishing Innovative Complex Services: Learning from the Active Together Cancer Prehabilitation and Rehabilitation Service

Prehabilitation and rehabilitation will be essential services in an ageing population to support patients with cancer to live well through their life spans. Active Together is a novel evidence-based service embedded within existing healthcare pathways in an innovative collaboration between health, academic, and charity organisations. Designed to improve outcomes for cancer patients and reduce the demand on healthcare resources, it offers physical, nutritional, and psychological prehabilitation and rehabilitation support to patients undergoing cancer treatment. The service is underpinned by behaviour change theories and an individualised and personalised approach to care, addressing the health inequalities that might come about through age, poverty, ethnicity, or culture. Meeting the challenge of delivering high-quality services across multiple stakeholders, while addressing the complexity of patient need, has required skilled leadership, flexibility, and innovation. To support patients equally, regardless of geography or demographics, future services will need to be scaled regionally and be available in locations amenable to the populations they serve. To deliver these services across wide geographic regions, involving multiple providers and complex patient pathways, will require a systems approach. This means embracing and addressing the complexity of the contexts within which these services are delivered, to ensure efficient, high-quality provision of care, while supporting staff well-being and meeting the needs of patients

Pulmonary hypERtension and measurement of exerciSe caPacIty REmotely: evaluation of the 1-minute sit to stand test (PERSPIRE): a cohort study

Background: Multi-parameter risk assessment is recommended to aid treatment decisions in patients with pulmonary arterial hypertension. The 1-minute sit-to-stand test has been validated for use in other respiratory illnesses. The aim of this study was to evaluate its safety in the hospital setting and potential utility in remote assessment in patients with pulmonary hypertension. Methods: In a prospective cohort study design patients performed the 1-minute sit-to-stand and Incremental Shuttle Walk tests on the same day. The primary aim of the study was to assess safety signals and correlations with other metrics used in risk assessment. Results: Sixty patients with pulmonary arterial hypertension and 15 with chronic thromboembolic pulmonary hypertension were enrolled. No adverse events were recorded. Post-test change in physiological parameters was lower for the 1-minute sit-to-stand than for the Incremental Shuttle Walk test in heart rate (+9.4(8.0)bpm versus +38.3(25.9)bpm (p<0.001)), oxygen saturation (−3.8(4.0)% versus −8.9(7.3)%, (p<0.01)) and systolic blood pressure (+10.1(10.5)mmHg versus +17.7(19)mmHg, p<0.001). There were significant correlations between the 1-minute-sit-to-stand and Incremental Shuttle Walking test (r= 0.702, p< 0.01), WHO FC (−0.449, p<0.01), emPHAsis-10 (−0.436, p<0.001) and NT-proBNP (−0.270, p=0.022). Ninety-seven percent of patients were willing to perform the test at home. Conclusion: This study has demonstrated the safety, sub-maximal characteristics of the 1-minute sit-to-stand test in pulmonary arterial hypertension chronic thromboembolic pulmonary hypertension in the hospital setting, its positive correlation with the Incremental Shuttle Walk test and potential role in remote risk assessment. Further evaluation of this exercise test is now warranted

Developing a pressure ulcer risk factor minimum data set and risk assessment framework

AIM: To agree a draft pressure ulcer risk factor Minimum Data Set to underpin the development of a new evidenced-based Risk Assessment Framework.BACKGROUND: A recent systematic review identified the need for a pressure ulcer risk factor Minimum Data Set and development and validation of an evidenced-based pressure ulcer Risk Assessment Framework. This was undertaken through the Pressure UlceR Programme Of reSEarch (RP-PG-0407-10056), funded by the National Institute for Health Research and incorporates five phases. This article reports phase two, a consensus study.DESIGN: Consensus study.METHOD: A modified nominal group technique based on the Research and Development/University of California at Los Angeles appropriateness method. This incorporated an expert group, review of the evidence and the views of a Patient and Public Involvement service user group. Data were collected December 2010-December 2011.FINDINGS: The risk factors and assessment items of the Minimum Data Set (including immobility, pressure ulcer and skin status, perfusion, diabetes, skin moisture, sensory perception and nutrition) were agreed. In addition, a draft Risk Assessment Framework incorporating all Minimum Data Set items was developed, comprising a two stage assessment process (screening and detailed full assessment) and decision pathways.CONCLUSION: The draft Risk Assessment Framework will undergo further design and pre-testing with clinical nurses to assess and improve its usability. It will then be evaluated in clinical practice to assess its validity and reliability. The Minimum Data Set could be used in future for large scale risk factor studies informing refinement of the Risk Assessment Framework

Outcome Measures Used in Studies of Rehabilitation in Pulmonary Hypertension: A Systematic Review.

RATIONALE: The evidence base for rehabilitation in pulmonary hypertension is expanding but adoption in clinical practice is limited. OBJECTIVES: The World Health Organisation International Classification for Functioning, Disability and Health (ICF) identifies 3 health domains; Body Functions/Structures, Activity and Participation in society. To ensure that the wider impact of rehabilitation in pulmonary hypertension is accurately assessed it is important that study endpoints reflect all three domains. METHODS: A systematic review of the literature was conducted to identify studies of rehabilitation in patients with pulmonary hypertension from 2006 to 2019. RESULTS: Searches across five databases yielded 2564 articles of which 34 met eligibility criteria; 50 different outcome measures (mean=5, min=1, max=9) were identified. When mapped onto the World Health Organisation International Classification for Functioning, Disability and Health, 48% of instances of outcome usage were measures of Body Functions/Structure, 33% were measures of Activity and 18% were measures of Participation. Measures of Participation were not included in seven studies (21%). CONCLUSION: Studies of rehabilitation in pulmonary hypertension have focussed primarily on measures of Body Functions/Structure; the impact in other health domains is not well characterised. Greater inclusion of outcome measures reflecting Activity and Participation in society is needed to allow assessment of the wider impact of rehabilitation in patients with pulmonary hypertension

Evaluating the impact of post-qualifying social work education.

Post-qualifying awards in social work are well established within the continuing professional development agenda for qualified social workers in the UK. The evaluation of education and training should be an integral part of this agenda because it is important to ensure that programmes continue to meet standards of delivery, are successful in meeting their aims and objectives and are making an impact on practice. However, there is limited amount of published work on the evaluation of post-qualifying social work education, with studies often focusing on programme delivery rather than on their impact on practice. This paper explores evaluative work within the current post-qualifying social work framework, and discusses the results of an evaluation of the Vulnerable Adults and Community Care Practice programme, a specialist post-qualifying social work education programme run by a UK university, as an example of an evaluation of the impact on practice. The results indicate positive evidence of impact on practice and demonstrate examples of how the programme has had a direct effect on individuals, teams, organisations and on people who use services

Embedding Multimodal Rehabilitation Within Routine Cancer Care in Sheffield—The Active Together Service Evaluation Protocol

Background: Approximately 3 million people in the United Kingdom are currently living with or beyond cancer. People undergoing treatment for cancer are at risk of complications following treatment. Increasing evidence supports the role of rehabilitation (including prehabilitation) in enhancing psychological and physical well-being in patients with cancer and improving outcomes. Active Together is an evidence-based, multimodal rehabilitation service for patients with cancer, providing support to help patients prepare for and recover from treatment. This paper presents the evaluation protocol for the Active Together service, aiming to determine its impact on patient-reported outcomes and clinical endpoints, as well as understand processes and mechanisms that influence its delivery and outcomes. Methods: This evaluation comprises an outcome and process evaluation, with service implementation data integrated into the analysis of outcome measures. The outcome evaluation will assess changes in outcomes of patients that attend the service and compare health care resource use against historical data. The process evaluation will use performance indicators, semistructured interviews, and focus groups to explore mechanisms of action and contextual factors influencing delivery and outcomes. Integrating psychological change mechanisms with outcome data might help to clarify complex causal pathways within the service. Conclusions: Evidence to support the role of multimodal rehabilitation before, during, and after cancer treatment is increasing. The translation of that evidence into practice is less advanced. Findings from this evaluation will contribute to our understanding of the real-world impact of cancer rehabilitation and strengthen the case for widespread adoption of rehabilitation into routine care for people with cancer.</p